**If you have read Welcome to Holland, you will really appreciate this. I was approached by Dana through email a few months ago as she was trying to share this–it is amazing. Check out her blog.**

Amsterdam International

In the special needs world, there is a poem (essay? whatever.) called “Welcome to Holland.” It is supposed to explain what it’s like to have a child with special needs. It’s short and sweet.

It skips everything.

While “Welcome to Holland” has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written “Welcome to Holland”, I would have included the terrible entry time. And it would sound like this:

Amsterdam InternationalParents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything—you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization—your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up—you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious—how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

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Dear Dana,
I just read your comment to ‘Welcome to Holland’ and tears are flowing down my face, I couldn’t have written that better myself! WOW! You nailed it! I can’t believe there is someone else who actually understands and knows what I’m feeling and what John and I are experiencing. You are accurately on point (for me), down to the very last drop of sadness, disappointment, fear, anger, confusion, agitation and frustration…

Its like our flight to Italy wasn’t re-directed, but was hijacked by the unassuming flight crew who seem “nice” enough, but turned out to be ravening wolves in sheep’s clothing (who aren’t even sure why they are committing such a horrible act of violence). They continue to hold us at gun-point in the airport while trying to persuade us to take their drugs (something readily available in Amsterdam International) to dull the pain or maybe to just control our rage against them. The wolves, of course, being the doctors who could not diagnose Silas for weeks and are so clueless about the disorder are unable to help/cure him when they finally do diagnosis him.

I also have to tell you, the part you wrote about other people’s sympathy resonates particularly well with me too:

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help.

Why do people think its helpful to keep saying how horrible the situation is and/or how bad our life must be. Are they that clueless? They say they’re genuinely concerned, but the constant negativity forces me to alienate them from my life because I do not need/want negative energy in my life. Clearly they don’t see the beauty in my child and realize that no matter what happens I would not (in a New York minute) trade my life for theirs. Why would I?? I have a gorgeous (not just beautiful, but GORGEOUS son) whose smile lights up the room like a sky full of stars on a dark night, and I have a husband, who is the love-of-my life, who devotes his life to giving us a great life, and a supporting family and fantastic friends who are there to laugh with and will pick me up from the floor when I’m having a grey day.

We had a nurse who was such a downer that we had to discontinue her services. She would come in every shift and give me these puppy dog eyes and say things like: “I don’t know how you get up in the morning,” “I can’t believe you’re not taking any kind of drugs, how do you do it,” “I feel so sorry for you, its unbelievable what you’ve been through.” ETC…. The last straw was when she sat in my son’s rocking chair and literally cried tears about how badly she wanted to move to another city because her daughter doesn’t like the school district she attended in our city. It took all my might not to bounce her out of the chair that night, but I calmly said, “How can you cry about this when you have 3 healthy children and that should be all that matters. Especially when you see so many chronically ill children on a daily basis. I would live in the arm pit of the country (fill in the blank) if Silas could be healthy and Valentia could have lived).”

I don’t understand why someone would act in that manner. My husband John got it right when he said that some people are just miserable no matter what good fortune they have in their lives so clearly they will never be able to understand how we are “holding it together” because to them it would be the end of the world. Clearly, the nurse who was unhappy because she wanted to move to a different city falls into that unhappy no matter what category, and the others just have to be clueless.

I agree Lis, you cannot have those “debbie downers” around you. You need positive people who see Silas as a person, not just a patient with tubes and a ventilator feeling sorry for you all. It is what it is and a nurses job is to make the best of the situation and not make you feel uncomfortable or worse about it. So screw that person and any other person who takes it upon themselves to make you feel sad or angry. Thats all, screw em and after wards watch Housewives of Beverly hills!

Welcome to Bridging the Gap

Hello! If you are here, it probably means you know and love someone with SMARD (Spinal Muscular Atrophy with Respiratory Distress). SMARD, a genetic neuromuscular disorder, is extremely rare, and there is neither treatment nor cure.

Here at Bridging the Gap, we are hoping to offer a lifeline to families struggling with a SMARD diagnosis. Knowing that SMARD patients are few and far between, we would like to bridge the gap between us, as well as offer support and a community.

Welcome! If you have any questions or are recently diagnosed and don't know where to begin, email us at bridgingthegapSMARD@hotmail.com

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http://fsma.org Families of SMA is an organization dedicated to helping families affected by SMA and SMARD. They are involved in research and fundraising as well.

http://fightsma.org FightSMA is an organization that lobbies for SMA research in the US.

http://SMASpace.com SMASpace provides a place that parents of children with SMA and SMARD can communicate. There is a specific group for SMARD.

http://fightermom.com Mothers as disease advocates.

http://gwendolynstrongfoundation.com The GSF advocates and raises money for SMA research and cure. They are especially involved with stem cell research.

http://kidzorg.blogspot.com Kidz is a great place for special needs parents.

http://www.5minutesforspecialneeds.com A site for special needs parents.

http://littlestheroesproject.com Littlest Heroes offers free photo sessions for chronically and terminally ill children and their families.